my husband was diagnosed with PSC about ten years ago. Since then his care has been well managed at MGH in Boston. He uses Ursodiol and had balloon dilation which held up well for many years. During routine screening they found a tumor in his bile duct and last winter he underwent a surgery to remove over 60% of his liver. It was a very difficult surgery and recovery period. He is 42 years old and we have two young children. We live in the western part of Massachusetts about 2 hours from Boston and 3 hours from NYC. The most difficult part of the recovery has been a chronic bile leak at the site of the liver resection. Obviously PSC makes it very hard for the ducts to heal properly. He had an internal drain for about a year. They tried several times to ‘glue’ the leak with a medical polymer. They tried several other approaches with no change at all in the output of the leak. We are incredibly frustrated with the situation but also that our team seems stumped and does not communicate effectively with us. There isn’t really a ‘team leader’. Last week he was hospitalized due to internal bleeding at the site of the leak (caused by the leak). At this point we would like to seek a second opinion.
Does anyone here have any experience similar to this? We are beginning to feel we are the only people in the world dealing with this. And with that in mind, could anyone recommend a very high quality facility where we might get a second opinion? Traveling very far would be difficult but we are ready to consider all our options.